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Aero

New member
Joined
Mar 6, 2014
Messages
4
Reason
DX FIBRO
Diagnosis
01/2014
Country
US
State
Montana
Hello Everyone,
It is so great to have a forum like this for support. The last thing my doctor told me was "this day will be your best day as you will only digress", accept you know have a disability. I wanted him to be very forthright with me and he was, it meant the world to me and I am so honored to have the doctor I have.

Life moves on, I would like to ask everyone, who has filed for Social Security Disability and what challenges have you experienced?

I was diagnosed with Fibromyalgia Syndrome in December 2013, prior to that I was diagnosed with Osteoarthritis, sleep apnea, and Degenerative Disc Disease, in which I have had 4 injections, acupuncture, and deep tissue massage with no relief. My pain has escalated quickly along with major memory and concentration issues. Prior to all this I was a Golf Course Superintendent for almost 30 years. I am finding I was a little hard on my body in the golf business. Between 2012 and 2014 I had knee surgery to both knees because of severe meniscus tear and my left should because I had bone spurs and slight tear in the rotator cup.

With all this being said, I am in the process of filing for Social Security Disability, it is a lot of paper work and preparation and then they want you to do more paper work. So, I would so greatly appreciate anyone's input on Social Security Disability and were they denied, did they have to get an attorney? Any help would be so grateful.

Thansk again for this wonderful forum and make each day count!

Aero
 
I am also in the process of filing for disability. I was denied the first time, and am now appealing with the aid of an attorney. It is a lot easier than I thought it would be, appealing with an attorney, I mean. The waiting is the worst. Even worse than the paperwork. Hope all goes well for you.
 
I'm Canadian, and our process is a bit different, but I'm on my second go with my province's disability. My rheumatologist wrote a letter to them explaining my issues and that I should not be working. However, one sentence wrecked any chance of my acceptance. All she wrote was, "mild arthritic changes," and they denied me and denied my appeal. With mild arthritis, they said, I should have no issues working. The problem is, no one said I had arthritis. My disease has always been Mixed Connective Tissue Disease. So, the fact there is even mild arthritic changes means something. I'm not supposed to have that with my disease. They could not get passed that sentence though. Everything else my doctor wrote was completely disregarded.

I found it to be a disheartening experience but have decided to try again as it's been two years. Another section of my government has deemed me unfit to work and pays me about half of what disability would pay. It's not enough but, at least it's something. I just have to wait until August to see my new rheumatologist as my old one retired in January. They didn't like the report from my orthopedist so I have to wait a few months.

I hope you have better luck than I did.
 
Thanks for the input and guidance painsmylife and LivetoErr. It is very difficult to explain our predicaments at times to those who are judging us. They know not of our battles and for what losses we have had to face. I am only 55 years old and was a kid at heart not long ago. I look back a year ago and sure I had some pain and discomfort, but, I was of the mind that aging was not an option, yet maturing was.....I was snowboarding with my wife, son, and daughters and having the greatest of times. With my diagnoses and the lack of concentration and even balance at times, it would be not of good will or mind for my family or myself to think I could snowboard again. Memories is what I must now hold dear to my heart and for those who judge us......I can only pray for their will and heart to see the challenges we truly face with each new day. Thank you again, and let's keep in touch to our adventures through the disability system.

Ride On!
Aero
 
I'm Canadian, and our process is a bit different, but I'm on my second go with my province's disability. My rheumatologist wrote a letter to them explaining my issues and that I should not be working. However, one sentence wrecked any chance of my acceptance. All she wrote was, "mild arthritic changes," and they denied me and denied my appeal. With mild arthritis, they said, I should have no issues working. The problem is, no one said I had arthritis. My disease has always been Mixed Connective Tissue Disease. So, the fact there is even mild arthritic changes means something. I'm not supposed to have that with my disease. They could not get passed that sentence though. Everything else my doctor wrote was completely disregarded.

I found it to be a disheartening experience but have decided to try again as it's been two years. Another section of my government has deemed me unfit to work and pays me about half of what disability would pay. It's not enough but, at least it's something. I just have to wait until August to see my new rheumatologist as my old one retired in January. They didn't like the report from my orthopedist so I have to wait a few months.

I hope you have better luck than I did.

Woah... so sorry to hear that! I have heard of similar stories told by other Canadian folks. It sounds like filing for disability over there can be even more tricky than in the states. So terrible they denied you only because of that small sentence... woah! I truly hope you are successful this time! Best of luck!
 
I live in the UK,as does my sister in-law,who suffers from fibromyalgia. She was also denied disability, on her first attempt. However she was granted this benefit the next time she applied. She sought professional help to fill all relevant paperwork. My advice is to seek professional help as they are more accustomed to dealing in these matters.
 
My friend has been denied twice, so now he works from home. It's not as bad as some of the cases I've heard about but still, I wish my country would do a little more to help him.
 
I am on SSDI. I was turned down once. I refused to get an attorney. There are social groups that will assist you for free. Search for county free legal help. After I was turned down I filed an appeal and when I went to speak in front of the judge this guy went with me for support (free legal guy). I think it impressed the judge and frankly it helped to have a man in my corner. I was an RN for over 20 years and I wouldn't wish this on my worst enemy. I would much rather be working and now I can barely make ends meet financially! Anyway, I was approved after that appeal. Its not always about your "diagnosis". It is seriously about how your symptoms affect your every day life. Make sure your are 100% sure you need disability because it is very hard to make it on this small income. I had a friend who was ready to go on disability but she went to a naturopath and she was helped 100% and went back to work. Exhaust every avenue and keep paperwork, follow thru with everything and you will get approved, it just takes time and perseverance. Good luck!
 
A friend of mine applied for social security disability for her fibromyalgia. It was turned down the first time and hired a lawyer. She had to appeal it with the help of the lawyer two times. The case dragged out for a long time. She paid the lawyer $4300. She finally got it after a long time. She got a retroactive cheque for $8000 dollars. this helped pay the lawyer. so I guess its worth appealing it in the end. If you are turned down, keep appealing it. Good luck!
 
Trying to get Social Security disability is a very long process, especially for fibromyalgia. It took me a little over 2 years to get approved. I got rejected twice, filed appeals and finally got a hearing with a judge in November of 2013. I also have degenerative disc disease. One of the questions the judge asked me was did I think I could do work from home using my computer. I hesitantly told him I might be able to, my husband afterwards told me I shouldn't have said that. The judge said that statement proved to him that I was genuine and I think based on that plus the medical reports he had stating that I could not work at the job I use to do(postal worker) plus my age...I am 60 was the reason I finally got approved. I was thrilled that the judge also found me to be disabled 2 1/2 years back so I received a nice sum in retroactive disability benefits.
 
I applied for disability and was denied the twice before getting an attorney to take over. That was the best thing I could have ever done. My case was different than the standard. I was told it would take 12 to 24 months to get a hearing date but, I got a date in two week that was for two months away. I was scared because I just knew that meant I was going to lose and they wanted to get me off the books early. But that was not what happened, I talked to the judge and to my attorney surprise I was approved on the spot. She said that only happens once every fifteen years. I think anyone with fibromyalgia that can't work anymore should get an attorney first before applying. I paid nothing out of pocket for my attorney it was paid for by my back payment. I still had enough money left from my previous denial and, months of not working after being diagnosis to still get a lump sum check.
 
It is so typical for people that need to get disability to be denied at least once and often more than once. So, the first thing that I would say is that you need to be aware that it is going to take a while before you will be approved. I also do think that if you can afford a lawyer that is a really good idea because they have been through the process before and will be able to keep you up to date on what to expect.
 
I am in the application process as well. Its a pain in the rear end sometimes. My mother in law has worked in the medical field for over thirty years and her significant other was a state employee and they have helped me a LOT with advice on how to answer things and deal with things. I do know that my mother in law has written some letter for a few people who were awarded disability. Something she told me to do was to keep a daily journal of how I am feeling, what my pain levels are for the day, what symptoms I am experiencing that day and what part of my body was being affected. She told me to write what I was able to accomplish that day, so fir instance I mopped the floors today it took 4 hours from start to finish with the many breaks I had to have. And naturally I write each time I see the doctor of any kind and the reason for the visit and what was done. I suffer from PTSD and I go to therapy once a week, so I write that in there and if there is anything of significance about the visit I write it in. I put how many hours I slept, how many times I woke up and for me I have intrusive nightmares so I note if I am having them or not.

I wish each of you the best of luck in getting approved for your claim. I do not know what I would do if I did not have a spouse who was so supportive in many ways, but especially financially, as I have been out of work for 13 months now. I could not imagine how taxing it is on people without a strong support system because even though I have a strong support system, there are still moments when things get intense when it comes to finances, or when someone in my circle is not feeling their best and gets a little irritated with me because I could not accomplish something they think I should have been able to do or they get frustrated because I am so sick I cannot enjoy doing things with them. It always washes over and things go back to being what they were but its not always easy.

The days are a blur, I used wonder just what people who did not work or who were disabled did all day and night, day after day, apparently now I know. For me the days are pretty much a blur. I cherish the good days I have and I try to make the most of them, and I rest when my body says rest. Because of my brain fog I do keep a little notepad on my desk now and write things in there and my family does too. Like to remind me to go pay a bill this week or what day I have to go to therapy etc.
 
They tend to deny people with fibromyalgia, at first , I do not know why, but when you do it with the help of a lawyer, you do get through.
 
I am one step from moving toward disability. I had heard that if you have children, that if you are approved, you can get more. Do any of you know if that is true? When I look at the Social Security information on me that says I've worked enough to be considered, children are mentioned, but I can't tell for sure. If I could get it for myself with some additional to help me support my daughter because I'm disabled, would be such a relief. I don't know how people survive financially from bringing in a salary to waiting for the government to make a determination. I've thought about talking to our bank that carries our home loan to see if they will work with us. I have excellent credit and I don't want to lose my house or credit rating. Although, I guess we don't always have a choice.... :-(
 
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